Which MTHFR Protocol to use? Pathogenkiller

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Conquer UC
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   Posted 8/4/2013 9:39 AM (GMT -6)   
I just thought being prepared in advance for the genetic testing results would be a good thing :D
So doing a search on MTHFR mutation protocols, there seems to be two: the complicated one by dr Ben Lynch, and the simplified one by dr Rich Van Koneynenburg.
Which one would you recommend? Which one did you follow?

Do i have to be on these supplements for life?

Also, did you do this on your own or did you do it under the guidance of a practitioner?

Thanks so much xx
26 yo Nutritionist
UC pancolitis dx April 2011 ~1 month after birth of my first child. Remission after a course of pred (hated s/e esp psychological ones!) .
Proctosigmoid flare Jan '12. End flare: Sept 2012. What helped? Prayer (lots) + Paleo and TCM diet, vit E & kefir grain enemas, Isatis cooling, Clipper, acupuncture, NZ colostrum, squatting, psyllium seed.

TheAnswersYouSeek
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Total Posts : 2543
   Posted 8/4/2013 2:12 PM (GMT -6)   
Oh gosh.. there are SOOOO many different protocols and ideas, that's just the tip of the iceberg. It really depends on your full snp profile. There is, unfortunately, no one size fits all.

Ive had to do this largely on my own. My practitioner does not believe in anything beyond MTHFR.

Conquer UC
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Date Joined Jan 2012
Total Posts : 1158
   Posted 8/5/2013 8:25 AM (GMT -6)   
Grrrr this is getting confusing...ok so this another thing i can't plan for...looks like i'll have to wait for the results.
So...if you don't mind me asking how did you 'figure' out a protocol for yourself? Like how much reading would i have to do to figure one out for me? *gulp*
26 yo Nutritionist
UC pancolitis dx April 2011 ~1 month after birth of my first child. Remission after a course of pred (hated s/e esp psychological ones!) .
Proctosigmoid flare Jan '12. End flare: Sept 2012. What helped? Prayer (lots) + Paleo and TCM diet, vit E & kefir grain enemas, Isatis cooling, Clipper, acupuncture, NZ colostrum, squatting, psyllium seed.

TheAnswersYouSeek
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Date Joined Jan 2013
Total Posts : 2543
   Posted 8/5/2013 12:23 PM (GMT -6)   
Heh.. So, basically I looked at all Amy Yasko's stuff, all Ben Lynch's stuff, all Rich Von konynenburg's stuff.. The heart fixer website.. And several bulletin boards on fb and the web.. (really like phoenix rising) Then I threw most of it out, lol and studied the cycles at play in depth, learned the enzymatic reactions and started experimenting. When I help people with it, I mainly stick with what the folks above say. But for my own protocol, I tweak based on the science of the cycles and my symptoms.. And what I see happen in my blood when I change things.

At the end of the day though, my personal belief parallels my MDs.. Mthfr 1298 and c677t are the most Important to treat if you have them and then You branch out from there. I have a theory that in ibs the mitochondrial genes are being strongly impacted too and I'm working through that with some folks now where we didn't get as much progress as you'd hope with just treating Mthfr.. There are also other genes that the gurus have flagged as needing treatment first.. Like if you react to sulfur (even just preservatives) and you have CBS snps, you should likely address them first with a low thiol/sulfur diet and molybdenum before you rev mthr too much. All this to say, you'll likely need to devote a considerable amount of time :(

Conquer UC
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Date Joined Jan 2012
Total Posts : 1158
   Posted 8/6/2013 8:13 AM (GMT -6)   
I have had a read of all the things you mentioned, except for the forums.

Something that my naturopath, who treats MTHFRs and does genetic testing, said today had me a bit stumped. When i enthusiastically told him that i was getting tested for the mutations blah blah he seemed unfazed and said that testing positive for the mthfr gene, or any other gene for that matter, is not enough. Becase you could have that gene but it could be switched off, meaning you could be ok. Kinda like carrying the BRCA gene, does not mean you have cancer but rather you could get breast cancer as it makes you more susceptible.

I then asked him so how does he know the mthfr genes are turned on or off and he said he would have to test homocystiene (?sp) blood level to find out.

What do you think?
26 yo Nutritionist
UC pancolitis dx April 2011 ~1 month after birth of my first child. Remission after a course of pred (hated s/e esp psychological ones!) .
Proctosigmoid flare Jan '12. End flare: Sept 2012. What helped? Prayer (lots) + Paleo and TCM diet, vit E & kefir grain enemas, Isatis cooling, Clipper, acupuncture, NZ colostrum, squatting, psyllium seed.

TheAnswersYouSeek
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Date Joined Jan 2013
Total Posts : 2543
   Posted 8/6/2013 8:56 AM (GMT -6)   
Yes, snps can not be expressing. And it does make things challenging.

Homocystiene is a good marker for MTHFR, BUT if you have CBS snps that are expressing they can be pulling the homocystiene down the transulfuration pathway hiding the expression of MTHFR. Also the test ranges for homocysteine are high.. if you have over 9 you have an issue.

The spectracell test that shows you what nutrients are actually making it into your blood cell levels can help see if you are actually able to use folate and b12, it also tells you if a cofactor, like lithium which helps b12 be useable, needs supplementing.

Because our immune systems are so strongly effected by UC my reasoning is that it is likely that many of these things are turned on and Id rather try treating them and see if it helps. For me, it has helped a great deal. MTHFR definitely got the ball rolling, but even beyond mthfr Im seeing wonderful benefits supporting things like the mitochondria and neurotransmitters.

Conquer UC
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Date Joined Jan 2012
Total Posts : 1158
   Posted 8/7/2013 9:41 AM (GMT -6)   
I was thinking now im starting to understand things a bit better.
Lol and then you mention the mitochondria and neurotransmitters and i start thinking what does she mean by supporting those..? Are these also on the genetic test panel?

I see you mentioned spectracell before, but did you actually use it yourself? Mind you these tests are adding up and they aint cheap hehe...but if they are essential then it's got to be done.
26 yo Nutritionist
UC pancolitis dx April 2011 ~1 month after birth of my first child. Remission after a course of pred (hated s/e esp psychological ones!) .
Proctosigmoid flare Jan '12. End flare: Sept 2012. What helped? Prayer (lots) + Paleo and TCM diet, vit E & kefir grain enemas, Isatis cooling, Clipper, acupuncture, NZ colostrum, squatting, psyllium seed.

TheAnswersYouSeek
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Date Joined Jan 2013
Total Posts : 2543
   Posted 8/8/2013 12:25 AM (GMT -6)   
I was responding to your doctor's opinion on testing.. homocysteine tells you part of a picture, yes.. but there are other parts. I dont think you need spectracell, necessarily. Homocysteine, b12 and folate levels would be good, standard tests that are covered by insurance here and a good place to start. Plasma ammonia is also a good number to know if you have the cbs mutations..

I have gotten spectracell/nutreval.. probably will again in about 6 months after I have more healing under my belt.

As for supporting mitochondria and neurotransmitters.. basically yes, some clues to issues in both areas are on 23andme based on snps. But it isnt as if the test will flag those. Mthfr, COMT, CBS, MAO A, VDR Bsm and VDr Folk are some clues

Conquer UC
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Date Joined Jan 2012
Total Posts : 1158
   Posted 8/8/2013 1:43 AM (GMT -6)   
Thanks for explaining things to me. Im doing more and more reading on the mutations so im putting two and two together now.
Yesterday and the day before i took a supplement which has methionine and zince sulphate in it, an the next two days im dealing with cramps and today even blood. And gassy as well. I was wonderig why and i looked at the cyles and it all made sense, the sulphate (although less toxic than sulphite) is still an excitotoxin, and the methionine goes into the cycle and produces homocysteine which (due to CBS upregulation -i think i have that based on Sx) gets converted into ammonia and ketoglutatate and the toxic sulphite.

Sheesh, this stuff makes sense. I like it when things make sense.

I like the heartfixer page, very informative. Dr James Roberts keeps mentioning the urine sulphate tests, and other things likw spectracell. Im thinking of contacting him to see if he can take me on as a patient. I mean there is ALOT of info on this topic, like i can read up and get educated but i don't know if i'll be able to figure out when to wean myself off the low sulphir diet, how to reintroduce sulphur foods, when to test again by spectracell, and what to do with the results. You know what i mean? I mean you are a legend for doing it on your own.

It's all exciting ad overwhelming at the same time.
26 yo Nutritionist
UC pancolitis dx April 2011 ~1 month after birth of my first child. Remission after a course of pred (hated s/e esp psychological ones!) .
Proctosigmoid flare Jan '12. End flare: Sept 2012. What helped? Prayer (lots) + Paleo and TCM diet, vit E & kefir grain enemas, Isatis cooling, Clipper, acupuncture, NZ colostrum, squatting, psyllium seed.

Conquer UC
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Date Joined Jan 2012
Total Posts : 1158
   Posted 8/8/2013 9:34 PM (GMT -6)   
So whatcha think PK about my methionine and sulphate experiment? Sounds like i got the CBS and SUOX mutations?

I'll get my folate, B12, and homocysteine in order.

How are you doing btw? Still good with dairy? Im hoping that maybe, just maybe, i will be able to eat gluten again when all the pathways are open. I remember you were wheat free, please update us on what happens when you/if you introduce it again in your diet.
26 yo Nutritionist
UC pancolitis dx April 2011 ~1 month after birth of my first child. Remission after a course of pred (hated s/e esp psychological ones!) .
Proctosigmoid flare Jan '12. End flare: Sept 2012. What helped? Prayer (lots) + Paleo and TCM diet, vit E & kefir grain enemas, Isatis cooling, Clipper, acupuncture, NZ colostrum, squatting, psyllium seed.

TheAnswersYouSeek
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Date Joined Jan 2013
Total Posts : 2543
   Posted 8/8/2013 9:47 PM (GMT -6)   
Don't really have an opinion on it, I don't think that means you have this mutations nrssecarily. My CBS mutations manifest as a down regulation as do most people's.Knowing your homocysteine will help.

Aren't you taking abx? That could cause cramps and blood. If you could get dr Roberts to do things, sounds like a good path. I'm not sure if he phone consults.

This is who I'd try if I was back at the beginning

http://proactivemed.org/paige-adams-fnp-bc-maps-fellow/

I can eat all dairy without issue. Had glorious whipped cream :) I limit it though to a couple servings a week outside of the denatured whey I drink daily. I haven't tried gluten. I honestly don't know that I will. Gluten is such a highly inflammatory food. I have duplicated all my favorite foods sans gluten. I even make a kick @ss baguette and a really really good pizza crust.. Cupcakes .. Pie crust.. I just don't need to reintroduce gluten. The risks aren't worth it to me. My gut is good, but I figure it will always be weaker.

Conquer UC
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Date Joined Jan 2012
Total Posts : 1158
   Posted 8/8/2013 10:02 PM (GMT -6)   
True, nothing can replicate dairy! Love love whipped cream :D
I too don't really miss gluten at all, i just find it difficult in social gathering when all the sweets all have gluten and im the only one who brings her 'special' cake or whatever with her. I mean my gf cake tastes awesome and everyone comments on how nice it is. But still sometimes i'd like to feel more 'normal'.

Really CBS is a down regulation? From what i read on heartfixer most people have it as an upregulation...here is what it says:
"CBS initiates the trans-sulfuration pathway, converting homocysteine in to cystathionine and its downstream metabolites. This is the most important Methyl Cycle defect and is present in 90% of the patients who we have tested. The CBS defect is an up regulation. CBS is operating at up to ten times its normal rate. Homocysteine and all of the upstream methyl cycle precursors will be “pulled down the CBS drain” to produce toxic levels of cystathionine metabolites
"

I'll contact both Dr Robert and Paige Adams. Thanks so much for the tip. Wow her illnesses were so many! I feel so empowered reading the stories of people who healed their 'chronic' and 'mysterious' illnesses. So inspiring. I hope one day i'll have my UC story to tell.
26 yo Nutritionist
UC pancolitis dx April 2011 ~1 month after birth of my first child. Remission after a course of pred (hated s/e esp psychological ones!) .
Proctosigmoid flare Jan '12. End flare: Sept 2012. What helped? Prayer (lots) + Paleo and TCM diet, vit E & kefir grain enemas, Isatis cooling, Clipper, acupuncture, NZ colostrum, squatting, psyllium seed.

TheAnswersYouSeek
Veteran Member


Date Joined Jan 2013
Total Posts : 2543
   Posted 8/8/2013 10:26 PM (GMT -6)   
Yeah, but thats not how it's playing out for most people I see posting about it. I see WAy more high homocysteine then low.

Another article
www.metabolichealing.com/michael-s-blog/metabolic-gateways-cbs-gene-mutations-and-glutathione/

If you notice it talks about how much has been said about the down regulation (because it's most common) but in a subset of people there appears to be up regulation.. You may be one of the subset, who knows?

I do appreciate tha Paige "knows" the gut and methylation/snps.

Conquer UC
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Date Joined Jan 2012
Total Posts : 1158
   Posted 8/9/2013 2:49 AM (GMT -6)   
Hmm i see. These genes are so individual. I'll find out soon what my results say.

Thanks for all the help PK, if it wasn't for you i would not have even heard of methylation mutations. Hope you keep sticking around to hopefully enlighten more people (and me lol) on this xx
26 yo Nutritionist
UC pancolitis dx April 2011 ~1 month after birth of my first child. Remission after a course of pred (hated s/e esp psychological ones!) .
Proctosigmoid flare Jan '12. End flare: Sept 2012. What helped? Prayer (lots) + Paleo and TCM diet, vit E & kefir grain enemas, Isatis cooling, Clipper, acupuncture, NZ colostrum, squatting, psyllium seed.

TheAnswersYouSeek
Veteran Member


Date Joined Jan 2013
Total Posts : 2543
   Posted 8/9/2013 5:05 PM (GMT -6)   
Glad to be a source of information. I'll be curious as to your genetics.
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